Evaluating quality of life and well-being at the intersection of dementia care and creative engagement

Abstract

Increasingly, art and design projects are used in dementia care settings to support the well-being of people living with dementia. However, the way well-being is defined and evaluated varies significantly in reporting. This study briefly examines the development of the concept of well-being and how it is intertwined with concepts of health and quality of life. It presents a scoping review of studies that use art and design to support the well-being of people living with dementia. We examined the characteristics and methodologies of the studies, how well-being is understood and operationalized, and how the outcomes are reported. The aim of this study was to understand whether there is any consistency in how well-being and related terminology are understood, the methodologies used, how projects are evaluated, the assessment tools used, and in what outcomes and implications are discussed. Results showed well-being and related terminology are used to reference the social, physical, states of mind and feelings, and in opposition to identified deficits. There was no consistent approach to how arts engagement for well-being in the dementia care space is carried out and evaluated. However, this study suggests that this is not necessarily problematic across arts engagement activities for well-being, providing the use of terminology and approaches, and means of evaluation are consistent and retain integrity within the design of individual projects. It suggests that well-designed projects provide frameworks that are able to take into account the many variables in relation to art and creativity and dementia care, and can offer transferability.

Keywords

dementia care art design evaluation quality of life well-being

Introduction

The risk of dementia increases with age (World Health Organization, 2020). While there are some reports of decreased incidences of dementia (Knopman, 2020; Wolters et al., 2020), more people than ever before are living into advanced old age, and the prevalence of dementia is predicted to increase (Alzheimer’s Association, 2020; Dementia Australia, 2020; Livingston et al., 2020). With no cure on the horizon, nor effective disease-modifying treatments (Dementia Australia, 2020; World Health Organization, 2020), cost-effective approaches are needed to support the everyday lives of the large number of people currently living with dementia and stakeholders in their care (Burley et al., 2020). This has resulted in a shift of focus toward how to support general health and well-being and quality of life, and a growing interest in nonclinical and non-pharmacological approaches to care that include creative engagement in the form of art and design activities.¹ The implications of these cost-effective approaches have been recognized by governments and organizations, resulting in the creation of policy and programs at local state and national levels (Australian Government, 2013; Liikanen, 2010, p. 9; National endowment for the arts, 2016). But, while organizations such as the World Health Organization (WHO) have provided much-used definitions for health (World Health Organization, 1948), the often-used well-being and quality of life are somewhat elusive terms. They are understood, defined, measured, and evaluated differently according to fields and disciplines (i.e., arts, economics, clinical, and medical) (Land et al., 2011), and according to whose quality of life is being assessed (e.g., young, old, and people with cognitive impairment, chronic disease, and mental health) (Lawton, 1999, p 148, Ravens-Sieberer et al., 2014). We will begin by briefly discussing the development of these concepts.

Many creative engagements at the nexus of arts and health suggest they have well-being outcomes. Using a scoping review methodology (Munn et al., 2018), we set out to explore how well-being, and by extension quality of life, is defined, operationalized, and evaluated in art and design engagements that profess to support the well-being of people living with dementia in aged care (Schneider, 2018). Recognizing the number of variables operating in relation to creative engagements and the dementia care space, we sought to understand the characteristics and methodologies of studies, terminology use, and how they are evaluated and assessed. The aim was to understand whether there is any consistency in terminology definitions, the extent to which aims are made explicit, whether projects are evaluated and what tools are used for assessment, and how the outcomes or implications of the study were discussed. The rationale for this study was based on the growing interest in how creative activities contribute to well-being and impact positively on health and quality of life—mostly by providing pleasure, meaningful activity, and social connection (Camic et al. 2014; Kenning 2016), and to show how this can inform the design of future projects in this area. The scoping methodology was selected because, unlike a systematic review, it enabled us to present a broad overview of existing relevant studies covering the topics and map the methodology and outcomes, without needing to exclude research according to quality or presence or absence of specific measures. The scoping review enabled us to focus on the approaches used to evaluate creative engagements in dementia care environments, specifically in relation to well-being and quality of life. Importantly, this study does not include projects with specific therapeutic, clinical, or medical outcomes (e.g., art therapy), nor projects with solely aesthetic ambitions.

Background

Before engaging with the literature in the scoping review, it is useful to understand what is meant by well-being, how it is intertwined with the concepts of health and quality of life, and how these terms are used in relation to creative engagements in dementia care. We will briefly discuss how the origins of well-being and quality of life focused on externally assessed factors such as health, affluence, and living conditions, and came to take into account subjective responses such as emotion, mood, sense of self, and self-esteem (Frisch, 2011; Keyes et al., 2011; Land et al., 2011). It is in the support of the latter aspects of well-being and quality of life where creative engagement can have most impact, the implications of which are wide-ranging (Stuckey & Nobel, 2010). For example, age-related conditions that impact general health, well-being, and quality of life have used a range of models of care from, for example, the biomedical to the biopsychosocial (Borrell-Carrió et al., 2004; Farre & Rapley, 2017). But treating aging as a disease to be overcome is both expensive and limited, and unsustainable in view of the global challenge of an older population (Goldman 2016). So, with increased economic resources needed to support an aging population, societies are increasingly looking for cost-effective ways to support older members of the community (Deloitte Access Economics, 2016), and creative engagement offering psychosocial support can play an important role (Stuckey & Nobel, 2010).

To understand how and when creative engagements positively contribute to well-being, particularly in the dementia care space, it is necessary to identify the aims and outcomes and evaluate the impact of creative engagement programs. But as definitions of well-being, and indeed, quality of life has changed over time, and differ according to fields and disciplines (health, economics, technology, medicine, education, and humanities); it can be difficult to identify what aspect of well-being is being addressed in individual projects (Frisch, 2011; Keyes et al., 2011; Land et al., 2011). There is no shortage of definitions, evaluation and measurement tools, and methodologies available across a range of fields and disciplines. However, it remains unclear as to why this is, and what methodology and evaluation are appropriate when. We will begin by exploring definitions of well-being and quality of life.

Well-being, quality of life, and health

The concept of a “good life,” wellness, or well-being has origins in Hinduism, Taoism, Buddhism, and the philosophical thinking of ancient Greece. It can be traced through religion, the enlightenment, scientific thinking, sociology, politics, and economics where it becomes well-being or quality of life research (Stoll, 2014). A key difficulty in well-being and quality of life research has been the variability and lack of a single formal definition, the wide range of measures and tools available, it not being related to an explicit theory, and well-being and quality of life research omitting to show how well-being outputs are related to inputs (Anger, 2011). The concept of quality of life further developed out of the desire to observe and evaluate societal well-being in terms of progress and advancement. The term was used in relation to assess both societal and national prosperity and the characteristics of an individual (Rapley, 2003. p. 11). Objective measures used included external makers such as societal and individual longevity, economic growth, the eradication of diseases, and the successful treatment of chronic disease due to scientific research and medical intervention. But, quality of life was shown to be a broad concept impacted by both objective and subjective influences, and alternative approaches are also needed. So, both objective and subjective indicators were developed in social sciences, economics, public health, and other disciplines to assess progress and change (Rapley, 2003, p. 11). Subjective assessment included self-assessment of status, health, well-being, life satisfaction, and happiness. However, often these terms are used without explicit definition (Barofsky, 2012, p. 626). For example, the term quality of life has been equated with, and interchangeably used in place of, well-being, satisfaction, and happiness. But quality of life is now increasingly recognized as an umbrella concept broader than, and encompassing, well-being, satisfaction, and happiness (Rapley, 2003, p. 11). The concept of quality of life has been extended further beyond referencing general happiness, satisfaction, well-being, or contentment with life, to also reference individual and societal flourishing, nourishment, and thriving (Rapley, 2003, p. 19).

Understanding what constitutes well-being and quality of life is further complicated when associated with health (Diener & Seligman, 2004). The terms well-being and quality of life were introduced to health in the mid-20th century through a recognition that health was not only about absence of ill health or death but also about a wholeness of life (Post 2014). Key to this shift was the 1948 WHO directive which sought to redirect the concept of health from a focus on deficit and ill-health to well-being, suggesting that health is “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity”² (our italics), whereas well-being, like quality of life, remains imprecise and broadly formulated, being a complex multifaceted phenomenon assessed by a wide array of subjective constructs. In the field of psychology, it is positioned as a dimension of quality of life. For example, it is frequently used synonymously and interchangeably with happiness or life satisfaction, whereas on other occasions, happiness and satisfaction are considered constructs of well-being (Anger 2011). Seligman (2011) in his well-being theory suggests well-being is composed of five domains: positive emotion, engagement, relationships, meaning, and accomplishment.

While the term well-being is becoming more commonly used in the discussion of health, there remains robust discussion in medical health, health care, and the health industries as to whether being “healthy” is the absence of any form of disease and infirmity or whether well-being and being healthy is living with chronic conditions (Rovesti et al., 2018; Sartorius, 2006; Seidlein & Salloch, 2019). As a result, many care healthcare policies still aim to maximize the absence of “illness.” But, in the aged and dementia care industries, there is an increasing recognition that people are living longer than ever before, and so, it is unrealistic to expect that individuals will not succumb to illness, disease, or infirmity throughout their lives, or that all illness, disease, or infirmity can be cured. So, the concept of health, as suggested by the World Health Organization (1948), is gaining traction as we recognize that older people need support to live well, rather than to be cured. In the nursing and healthcare environments, the concept of well-being is closely related to comfort, and the terms are often used interchangeably. For example, Kolcaba, as quoted by Pinto et al. (2016), states that comfort is “the immediate state of being strengthened by having the needs for release, ease, and transcendence addressed in the four contexts of holistic human experience: Physical, psycho-spiritual, sociocultural, and environmental.” These four aspects are frequently referenced as tenets of well-being.

Well-being, aging and dementia, and creative engagement

As shown, well-being and quality of life are impacted by both external factors such as basic needs of provision like housing, welfare, and clinical and medical care and by internal factors such as emotions, moods, self-esteem, social connection, resilience, purpose, meaningful engagement, meaning making, and the need for self-actualization (Maslow, 1970). There is an increasing recognition of how mood, emotions, and affect impact individuals’ perceptions of quality of life. Mood is a feeling that can develop and dissolve over time, whereas emotions are defined as short-lived psychological–physiological phenomena that represent efficient modes of adaptation to changing environmental demands (Levenson et al., 2007). Pinto et al. (2016) highlight the importance of recognizing and acknowledging “the individual’s perception of their personal situation in their own life in the physical, social, mental, and spiritual dimensions.” A person’s needs remain throughout life, but their perceptions are likely to change. Older people may find their needs become more difficult to realize because of reduced opportunity and decreasing motivation (Carstensen et al., 2006; Goebel & Brown, 1981). They may experience social isolation, loneliness, reduced self-esteem, and depression all of which can negatively impact quality of life and exacerbate existing medical conditions. This is further intensified for people living with dementia because they experience a decline in social connection and interactions (O’Luanaigh et al., 2012). Being an older member of the community or living with chronic disease, such as dementia, does not necessarily preclude people from having a good quality of life (Biggs & Powell, 2001). Aged care providers are exploring how to support individuals in maintaining a good quality of life and well-being alongside illness and chronic disease, by embracing a holistic view of health and well-being, and recognizing the importance of psychosocial needs, and developing resilience and self-esteem through social connection and meaningful engagement. This can be seen in the increased number of social and creative projects now taking place in residential facilities and home environments (Houben et al., 2020; Kenning, 2018; Kenning et al., 2018).

Creativity has long been associated with individual and societal well-being because it engages with the internal influencers of well-being: emotion, mood, resilience, connection, meaning making, and engagement (Stuckey & Nobel, 2010). Increasingly, research shows how engagement in creative activities can contribute to positive well-being and provide pleasure, satisfaction, meaningful activity, and social connection (Gauntlett, 2011). In addition, creative intersections³ have been shown to positively impact people with mobility, dexterity, and communication limitations; impaired cognitive and physical functioning; older people in general; and people living with dementia. Increasingly, creative activity is being used as a strategy to support well-being for people with reduced opportunities for social engagement and connection, both in home and in institutional settings (Kenning 2016; Kenning, 2016a, 2018; Kenning & Treadaway, 2017).

Evaluating well-being and quality of life

With the recognition that creative engagement is a cost-effective means to support the subjective well-being of individuals and communities, particularly in the aged and dementia care spaces, funding is increasingly being directed toward projects that use creative engagement to support well-being (Stickley, 2018). With this comes a greater demand for accountability and defined outcomes, and a need to understand how and when creative engagement has an impact. So, to learn from of these creative strategies, it is important to understand and evaluate projects effectively. However, the evaluation of creative projects is sometimes compromised because of shifting definitions of quality of life and well-being, aims not being clearly articulated, inappropriate measurement and evaluation methodologies, appropriate measures and evaluation approaches being used but reported incorrectly, or because outcomes of the project are unclear. While there are many ways of assessing projects and many tools that can be used, in evaluating quality of life and well-being, researchers are not always aware how the methods and tools have an impact on the findings and what outcomes are reported. For example, evaluation of emotions and mood relies on self-reporting, and while with an older population, it is feasible to engage in self-assessment of mood and emotion; these approaches can be limited when engaging with people living with dementia (Bedard et al., 2003). This creates challenges regarding how to evaluate the impact of creative engagement on quality of life and well-being in people with dementia, particularly when the most prominent symptoms of some dementias are memory loss, impaired judgment, a decline in the ability to connect and integrate information, and changes in emotional behavior (Kalaria et al., 2008). Therefore, careful consideration needs to be given to the methodologies used; however, in the first instance, it is necessary to identify what definition or understanding of well-being or quality of life or is being used, what are the aims and outcomes, and what is the appropriate methodology, before an effective assessment can to take place.

This study

The research question for this study was “How is well-being understood, what methodologies are used, and how are outcomes identified and evaluated in art and design engagement projects for people living with dementia.” We used a scoping review methodology to understand whether there is any consistency in well-being (and the associated concept of quality of life) terminology use, if project’s aims are made explicit, how projects are evaluated, the assessment tools used, and what outcomes and implications are discussed. We systematically surveyed literature on the topic, quantitatively synthesized what has been done, and summarized any gaps in the literature. According to Munn et al. (2018), a key difference between scoping reviews and systematic reviews is that in terms of a review question, a scoping review will have a broader “scope” than traditional systematic reviews with correspondingly more expansive inclusion criteria. In addition, scoping reviews differ from systematic reviews in their overriding purpose. We chose for a scoping methodology over a systematic review, as we aimed to provide an overview of a particular area, rather than to produce a critically appraised and synthesized result/answer to a particular question.

Information sources and search

We used eight databases (ProQuest, Medline, Embase, PubMed, Scopus, PsycINFO, Amed, and CINAHL) in which we searched for studies to use in the scoping review. We chose these databases as they all include journals that focus on health, psychology, and/or art, or are more general databases. Articles were identified that measured well-being in the context of art engagement activities in people with dementia. Search terms were chosen accordingly; three tiers of the search strategy (all possible synonyms of “wellbeing,” “art,” and “dementia” based on the background literature review) were developed and intersected by using the Boolean term “AND,” as presented in Table 1. Our search strategy resulted in 2737 references. After removing duplicates, 600 citations were imported to Covidence software to manage the screening process and data extraction.

Table 1.

Overview search strategy.

Tier 1—well-being AND	Tier 2—art AND	Tier 3—dementia¹
Wellbeing OR	art* OR	dementia OR
“quality of life” OR	design AND creat* OR	“cognitive impair*” OR
Happiness OR	“co-creat*” OR	“cognitive decline” OR
Well-being OR	creative OR	“Alzheimer’s disease” OR
“well being” OR	craft OR	“frontotemporal dementia” OR
“positive emotion” OR	design AND codesign OR	“vascular dementia” OR
“subjective well” OR	“participatory design” OR	“Lewy body” OR
“social engagement” OR		“neurocognitive disorder” OR
“social interaction” OR		“Parkinson’s disease” OR
“emotional engagement” OR		MCI OR
“emotion” OR

¹ Tier 3 (dementia) is based on MeSH terms including dementia (41 results), filtered by most common forms of dementia (according to definition by Dementia Australia): Alzheimer’s disease, frontotemporal dementia, vascular dementia, Lewy body disease, and Parkinson’s disease.

Data collection process

Screening

We undertook two sequential levels of article screening, based on the following: (1) titles and abstracts and (2) full-text articles. Two researchers independently screened all articles at each level. Any disagreement was reconciled by consensus. Inclusion criteria were as follows: (1) articles must describe original research, (2) involve human subjects that have (mild) cognitive impairments, (3) include a method or tool for assessing well-being or quality of life, and (4) evaluate an art intervention or creative engagement, other than staged performed arts (such as dance, music, and theater). Articles were excluded (1) if published in a language other than English, (2) if they focused on clinical outcomes, and (3) if research was carried out by art therapists as part of an art therapy consultation, as they had the intention of being a form of psychotherapy for remedial or diagnostic activities. Articles were included that use the term therapy but were clearly not seeking a diagnostic or remedial outcome and were focused on psychosocial aspects of well-being. Important to notice as this is a scoping review and not a systematic review, we did not exclude articles based on quality assessments of design and analyses, and no meta-analyses were used to aggregate findings.

Study selection

The 600 unique articles used for the screening described original research, involved human subjects that have (mild) cognitive impairments, included a method or tool for assessing well-being or quality of life, and evaluated an art intervention or creative engagement. After the title and abstract screening (level 1), 460 of 600 articles were excluded; in the full-text screening (level 2), 111 out of 140 articles were excluded, leaving 29 articles to be included for data extraction in this scoping review, as illustrated in Figure 1. For an overview of included articles, please see Table A1 in Appendix.

Figure 1.

Prisma diagram presenting article screening procedure.

Results

The articles were examined in relation to how well-being and quality of life were understood and defined, whether they were identified as aims and outcomes, how they were evaluated and whether any specific tools were used in the evaluation of the project, and how the subsequent outcomes were discussed. We then explored whether the stated aims of the project, tools used, and findings were consistent with the required stated outcomes.

Study characteristics

A total of 29 articles were used for the scoping review, of which 18 were published in the last 5 years (since 2015). Only five articles were published longer than 10 years ago. Most of the studies were conducted in either the United States of America (11) or the United Kingdom (9). Remaining articles describe studies in Germany (2), Australia (2), Canada (2), South Korea (1), Japan (1), and Italy (1). All studies selected participants living with some form and severity of dementia. The severity of dementia varied across studies and was usually measured using the Standardized Mini-Mental State Examination (Tombaugh & McIntyre, 1991); however, only a few studies specified the type of dementia (e.g., Alzheimer’s disease (AD) and vascular dementia). 10 articles described qualitative studies and 10 quantitative studies. The remaining nine articles used a mixed-methods approach. A variety of tools were used to measure well-being. The most commonly used tool was the Greater Cincinnati Observation Scale. The intervention or engagement involved visual arts. Participants were asked to observe art (5), create art (13), or both (11). The number of participants in studies varied from four to 125, with an average of 30 and a median of 17 participants.

Aims of the studies

All articles described studies that evaluate art engagement activities for people with dementia, focusing on changes of some element related to well-being. However, the way well-being was operationalized in the research design varied. Only 13 articles included aims, research questions, or hypotheses that specifically mentioned well-being or quality of life of people living with dementia. Interestingly, five of those articles did not define well-being or quality of life in their introduction (Byrne & MacKinlay, 2012; Ford et al., 2018; Schall et al., 2014; Seifert et al., 2017; Tyack et al., 2017). 10 articles focused explicitly on well-being and three on quality of life. Research designs were built around several themes, such as social aspects (Bae & Kim, 2018; Collucci et al., 2010; Schall et al., 2014; Sudha et al., 2013; Tsekleves et al., 2018), self-esteem, (Ford et al., 2018; Kelson et al., 2017; Tyack et al., 2017), and health outcomes (Camic et al., 2016; Camic et al., 2014; Flatt et al., 2015; Gross et al., 2015; Rosenberg, 2009; Schall et al., 2014), or they focused on enjoyment of and engagement in activities (Humphrey et al., 2017; Kelson et al., 2017; Rentz, 2002; Rusted et al., 2006; Sauer et al., 2016). Various articles focused on one specific art form (Bae & Kim, 2018; Collucci et al., 2010; Flatt et al., 2015; Rosenberg, 2009; Sudha et al., 2013) or specifically compared different activities (Gross et al., 2015; Kelson et al., 2017; Schall et al., 2014). Other articles were less particular in the formulation of their design and used open-ended terms such as “wide-ranging impact” and “explorative” (Brooker & Duce, 2000; Burnside et al., 2017; Camic et al., 2016; Johnson et al., 2015; Lokon et al., 2019; Roe et al., 2014; Seifert et al., 2017; Walsh et al., 2011; Windle et al., 2018).

Nine articles used no specific tool in the evaluation of the arts engagement activities (Burnside et al., 2017; Camic et al., 2016; Collucci et al., 2010; Flatt et al., 2015; Kelson et al., 2017; Roe et al., 2014; Rosenberg, 2009; Tsekleves et al., 2018; Walsh et al., 2011). The majority of these also did not express a specific aim or use a specific definition of well-being. They used terms such as well-being and quality of life interchangeably or focused on what they suggest are specific domains of well-being such as pleasure, self-esteem, and sustained interest. One article used definitions of well-being from the existing literature suggesting well-being is a subjective feeling and that self-transcendence is a correlate or predictor of well-being and intimated that this is what the project was to address (Walsh et al., 2011). Four articles suggested that the studies were exploratory (Byrne & MacKinlay, 2012; Camic et al., 2016; Flatt et al., 2015; Ford et al., 2018). They explored the extent to which art activities had an impact on people in terms of spirituality, on staff, on the physical environment, on “patients” and their families’ engagement, participation and enjoyment, on the “carer burden,” or on social inclusion and quality of life of people living with dementia. Alternatively, they were exploratory about how arts engagement activities impacted based on the length of the activities, the type of arts engagement, and the gallery or art environment. Each of these articles used qualitative approaches that included observation, interviews, field notes, focus groups, and thematic analysis.

One article which was exploratory also sought to identify the types of activities that were enjoyable, determine how it could be improved, and examine the impact of past art experience on the engagement. This was carried out through focus groups (Flatt et al., 2015).

Two articles posed hypotheses based on arts engagement could decrease social isolation, enhance self-esteem, lower symptoms of depression, improve mood, enhance quality of life, and improve social abilities by enhancing the patient’s ability to remember the past. These articles used mixed methodologies which included the following: self-reporting scales, take-home evaluations, and observer-rated scales which were developed by New York University and Museum of Modern Art staff, and questionnaires and interviews (Collucci et al., 2010; Rosenberg, 2009).

One article posed binary questions: “Will persons with late-stage AD show evidence of self-transcendence …” and “Will persons with late-stage AD show evidence of well-being.” The evaluation methodology was through real-time observation and post-event analysis (Walsh et al., 2011).

One study suggested that it aimed to expand current views of social and spatial dynamics in art practice evaluating through observation (Kelson et al., 2017).

Defining well-being

One of the aims of this scoping review was to examine how the concept of well-being is defined in research on dementia and arts engagement. More than half of included research articles (15) appeared to lack an explicit definition of well-being; before evaluating or measuring this concept, this potentially raises questions about what is being evaluated and the interpretation of reported changes in participants’ well-being (Byrne & MacKinlay, 2012; Camic et al., 2016; Camic et al., 2014; Collucci et al., 2010; Flatt et al., 2015; Ford et al., 2018; Gross et al., 2015; Hattori et al., 2011; Humphrey et al., 2017; Johnson et al., 2015; Kelson et al., 2017; Kinney & Rentz, 2005; Lokon et al., 2019; Rentz, 2002; Roe et al., 2014; Rosenberg, 2009; Rusted et al., 2006; Sauer et al., 2016; Schall et al., 2014; Seifert et al., 2017; Sudha et al., 2013; Tsekleves et al., 2018).

In six articles, well-being and quality of life were used simultaneously and interchangeably (Burnside et al., 2017; Flatt et al., 2015; Gross et al., 2015; Humphrey et al., 2017; Roe et al., 2014; Schall et al., 2014). Also, we found that in several articles, the definition of well-being used was based on what the evaluation tool employed measured (Gross et al., 2015; Hattori et al., 2011; Windle et al., 2018). For example, Windle et al. (2018) used definitions from the Greater Cincinnati Chapter Well-Being Observation Tool to explain the meaning of well-being.

In addition, a range of definitions of well-being were identified in the literature they included:

Well-being as a social concept

Several articles mention the social character of well-being, as it depends on “quality moments” (Brooker & Duce, 2000), “social contact” (Camic et al., 2014; Humphrey et al., 2017; Roe et al., 2014; Sauer et al., 2016), and “connectedness” (Sudha et al., 2013). One article defines well-being as ‘‘a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect, and trust’’ (Lokon et al., 2019). Well-being is said to depend on a “sensation of communication” (Seifert et al., 2017). Self-esteem is mentioned in several articles as a large determinant of the level of well-being (Flatt et al., 2015; Kinney & Rentz, 2005; Rentz, 2002; Seifert et al., 2017).

Well-being as a state of mind

Another theme found is that of well-being as a “subjective state of experiencing pleasure and happiness” (Johnson et al., 2015). “Well-being is the presence of subjective experiences as contentment, pleasure, and happiness, and occurs during leisure activities” (Flatt et al., 2015). In several articles, well-being is related to concepts like joy, happiness, and enthusiasm (Camic et al., 2014; Flatt et al., 2015; Johnson et al., 2015; Kinney & Rentz, 2005; Sauer et al., 2016; Seifert et al., 2017).

Well-being as opposed to ill-being

Well-being is found to be described as the opposite of ill-being (Sauer et al., 2016). When defining well-being, the “absence of depression” (Byrne & MacKinlay, 2012; Camic et al., 2014) and “social isolation” (Tsekleves et al., 2018), and the “avoidance of discomfort” (Humphrey et al., 2017) are mentioned. “Loneliness and lack of social interaction can affect the quality of life” (Roe et al., 2014), as well as “sensations of sadness, loneliness, and annoyance’’ (Seifert et al., 2017).

Physical well-being

This scoping review reveals well-being is often defined in relation to its physical aspect. Well-being concerns “cognitive benefits” (Camic et al., 2016) and promotes health (Roe et al., 2014; Schall et al., 2014).

Well-being as multidisciplinary and multi-explanatory

Remarkably, few articles acknowledge perception and according measurements (Gross et al., 2015; Johnson et al., 2015; Rentz, 2002; Tyack et al., 2017). “Well-being is a subjective feeling and proposed that self-transcendence is a correlate or predictor of well-being” (Walsh et al., 2011). “Research should examine well-being as a state of equilibrium or balance that can be affected by life events or challenges, which in turn can be subjectively assessed” (Tyack et al., 2017).

Evaluation and assessment tools

Where articles included aims, research questions, or hypotheses that specifically mentioned well-being or quality of life of people living with dementia, the tools they used were primarily observation and self-reporting scales or frameworks. They included Dementia Care Mapping, Clifton Assessment Procedures for the Elderly, grounded theory, Dementia Quality of Life (DEMQOL-4) questionnaire (Smith et al., 2005), the Bristol Activities of Daily Living Scale, Greater Cincinnati Chapter Well-Being Observation Tool, Geriatric Depression Scale, Apathy Scale, Dementia Behavior Disturbance Scale, Cohen-Mansfield Agitation Inventory, Affect and Engagement Rating Scale, Visual analog scales (EuroQol Group, 1990), QoL framework by Lawton (engagement, expression of pleasure, self-esteem, expression of emotion, and feelings), Mini-Mental-Status Examination, and Neuro-Psychiatric Inventory (Cummings et al., 1994). Where articles were less particular in the formulation of their design and used open-ended terms such as “wide-ranging impact” and “explorative,” the tools chosen also used observation and a self-reporting such as the Cincinnati Observation and Well-Being Tool.

Discussion

This study highlights the growing interest in bringing art and design projects aimed to support well-being to the dementia care space, as shown by the increase in research literature of the last 5 years. The articles in the scoping review did not focus on improving or evaluating clinical, medical, or therapeutic health. They did, however, engage with concepts of well-being and the quality of life of people living with dementia. However, it should be noted that not all articles stated these as aims or were explicit about this intention. While some articles defined well-being or quality of life from the outset of the article, others attempted to evaluate the impact of art for health programs without specifically defining well-being or “health”; the latter included studies that began with a question of “how art impacts…” There are a variety of reasons for this approach. Some studies positioned the art and design project as an intervention (language used more often in the clinical and medical space) with the aim of testing hypothesis or focusing on the investigation of a specific aspect of dementia. Here, we might suggest that the intervention, like the clinical, medical, and therapeutic approaches from which the term comes, attempts to carve out uninterrupted time and space in the care space to test the hypothesis or research question and fulfill the aims of the study. These studies set aims, provide a definition of well-being, use tools for evaluation that have been validated, and provide a focused analysis. They used quantitative or mixed-methods approaches which included observation, questionnaires, interviews, and well-being scales. Other studies did not clearly define aims or identified them as exploratory. These studies took an intersection approach, a term used by Vogelpoel & Gattenhof (2012), to discuss projects whereby the art and design project, while having a time and space allocated, does not operate completely outside the operations of the everyday (e.g., participants having afternoon tea or being taken out for toilet breaks are an expected part of the engagement). These intersections tend to focus on the processes of investigation, methods are often iterative, and evaluation approaches are less likely to be through the use of specific tools, but rooted in qualitative, ethnographic, observation, questionnaires, interviews, or visual methods (Leavy, 2015; Mitchell, 2011; Neuman, 2012). The majority of studies were investigations and explorations with either clear aims, or clear definitions, or specific tools, or evaluation approaches, but not necessarily all aspects of the study clearly addressed.

This seeming lack of consistency across projects could be seen as problematic. However, we would suggest that in the range of articles reviewed, the findings were successfully presented, when there was an internal rationale within the article. For studies that aim to test does an arts or design engagement do a specific thing (or range of things) the definitions used, evaluation and analysis approached need to align with the hypothesis, research question, or aim. For those articles whose aims are to explore the what, how, why, and when of art and design engagement, then the use of interpretative, qualitative, and inductive approaches is appropriate. The primary importance is that the definitions of well-being and quality of life are appropriate for the expressed aims, and the evaluation tools or assessment approach and analysis outcomes align. This may appear to be stating the obvious. However, it was evident that the internal logic of some studies was not sustained throughout and what was claimed as outcomes did not align with definitions used. This reflects the confusion in the art and design and dementia care spaces as to what needs to be used and when and for what purpose (there is no one size fits all).

A primary critique of the articles reviewed was that the reporting often lacked specific details and description of the process of the “on the ground” engagement, the evaluation process, and how and why these approaches were chosen, that is, what was done, how, and why. A consistent difficulty in reporting is creative engagement is related to the iterative nature of the many projects. The final outputs cannot be predicted from the outset, but a “road map” is needed as to how the outcomes were arrived at. For example, studies that were exploratory and were able to identify the aims and the process to be undertaken, and where definitions used were aligned and outcomes were clearly identified, support the potential transferability of study designs and frameworks for use in other contexts. It should be noted that, however, this does not necessarily support comparative studies, but models and internal logic and framework for other studies. In short, when an aim was specific, definitions explicit, and evaluation tool or process was identified, the outcomes were focused and clearly aligned with the project aims (Brooker & Duce, 2000; Gross et al., 2015; Humphrey et al., 2017; Johnson et al., 2015; Kinney & Rentz, 2005; Rentz, 2002; Sauer et al., 2016; Seifert et al., 2017; Windle et al., 2018). When aims were not clearly stated, definitions were not provided, and evaluation methods were only briefly described, then how outcomes achieved were not always clear.

Conclusions

Much of the work being carried out in relation to creativity and well-being in the dementia care space was exploratory to understand the wide-ranging impact on people with dementia and stakeholders in their care. However, it is important that researchers and artists provide information on what they did, why, and how and provide details on outcomes. While some studies were very clear about the aims of the projects, the design of the project, the tools used, and the outcomes, with exploratory projects, this was not always the case. The writing up of projects that had clearly defined aims, definitions, tools, and outcomes can be relatively straightforward. However, projects, for example, that are participatory, involved co-creation or were cross disciplinary, may have had wide-ranging aims; the design of the project may have been iterative and developmental, and a single “tool” may have not been suitable to evaluate the findings. Often projects needed to have a range of methods, tools, techniques, and processes available to them. At times, a project aims shifted or changed because of developments, particularly in qualitative and iterative projects. However, it is in the reporting of these dynamic and fluid projects where valuable information got lost. The articles reporting on these projects often did not provide a clear overview of the decisions made as the project developed, and the value of wide-ranging aims, needing to adapt tools, and nonspecific outcomes were not reported or were reported in apologia as opposed to embracing the often “real-word” “messiness” of arts engagement projects that intersected with the healthcare and dementia care space. Having shown that there is and has never been a consistent definition for well-being and related concepts, this reiterates the importance of identifying at least working definitions in studies to allow for a full understanding of what has been achieved. The variability in definitions used for well-being and quality of life is likely to continue. However, providing how these terms are being used in reporting usually leads to a cohesive reporting and supports transferability of study designs and frameworks.

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) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Gail Kenning

Notes

Appendix

Table A1.

Overview of articles included in the scoping review.

Title	Authors	Year	Citations	Country	Research methods	Art form	Engagement	Participants
The Applied Effectiveness of Clay Art Therapy for Patients with Parkinson’s Disease	Bae & Kim	2018	3	South Korea	Quantitative: hand dexterity, self-expression, and depression	Clay art	Create	54 People with dementia
Well-being and activity in dementia: A comparison of group reminiscence therapy, structured goal-directed group activity, and unstructured time	Brooker & Duce	2000	265	UK	Quantitative: Observation relation values	Crafts	Create	25 People with dementia
Here:now—Conceptual model of the impact of an experiential arts program on persons with dementia and their care partners	Burnside et al	2017	28	USA	Qualitative: Semi-structured phone interviews	Visual arts	Observe	13 People with dementia and 21 carers
Seeking meaning: Making art and the experience of spirituality in dementia care	Byrne & MacKinlay	2012	14	Australia	Qualitative	Not specified	Observe and create	15 People with dementia
Viewing and making art together: A multi-session art gallery–based intervention for people with dementia and their carers	Camic et al	2014	157	UK	Mixed methods: Questionnaires and interviews	Visual art	Observe and create	12 People with dementia and 12 carers
Theorizing How Art Gallery Interventions Impact People with Dementia and Their Caregivers	Camic et al	2016	61	UK	Qualitative: Observations, field notes, and interviews	Visual art	Observe and create	12 People with dementia and 12 carers
Preserving the cognitive abilities in Alzheimer Disease: An innovative intervention	Colucci et al	2010	1	Italy	Mixed methods: Questionnaires and interviews	Visual art	Observe and create	10 People with dementia
Subjective Experiences of an Art Museum Engagement Activity for persons with Early-Stage Alzheimer’s Disease and Their Family Caregivers	Flatt et al	2015	39	USA	Qualitative: Focus groups	Visual art	Observe and create	10 People with dementia and 10 carers
Art, music, story: The evaluation of a person-centreed arts in health programme in an acute care older persons’ unit	Ford et al	2018	11	Australia	Qualitative: Observations, interviews, and focus groups	Visual art	Create	Not specified
Creativity and dementia: Does artistic activity affect well-being beyond the art class?	Gross et al	2015	27	USA	Quantitative	Visual art	Create	76 People with dementia
Controlled study on the cognitive and psychological effect of colouring and drawing in mild Alzheimer’s disease patients	Hattori et al	2011	99	Japan	Quantitative: Questionnaires	Visual art	Create	39 People with dementia
Artful Moments: A framework for successful engagement in an arts-based programme for persons	Humphrey et al	2017	6	Canada	Mixed methods: Questionnaires and observations	Visual art	Observe and create	8 People with dementia
Museum activities in dementia care: Using visual analog scales to measure subjective wellbeing	Johnson et al	2017	43	UK	Quantitative	Visual art	Observe	36 People with dementia and 30 carers
Social citizenship, public art and dementia: Walking the urban waterfront with Paul’s Club	Kelson et al	2017	10	Canada	Qualitative: Observations, field notes, and transcriptions	Public art	Observe	15 People with dementia
Observed well-being among individuals with dementia: Memories in the Making, an art program, versus other structured activity	Kinney and Rentz	2005	161	USA	Quantitative: Questionnaires and observations	Visual art	Create	12 People with dementia and 12 carers
Activities in dementia care: A comparative assessment of activity types	Lokon et al	2016	8	USA	Quantitative: Observations	Various arts	Observe and create	67 People with dementia
Memories in the making: outcome-based evaluation of an art program for individuals with dementing illnesses	Rentz	2002	92	USA	Qualitative: Observations	Visual art	Create	41 People with dementia
Visual Arts Education improves self-esteem for persons with dementia and reduces caregiver burden: A randomized controlled trial	Richards et al	2018	3	USA	Quantitative: Questionnaires	Various crafts	Create	26 People with dementia and 26 carers
Coffee, Cake & Culture: Evaluation of an art for health program for older people in the community	Roe et al	2016	30	UK	Qualitative: Interviews and observations	Various arts	Observe and create	17 People with dementia
The MoMA Alzheimer’s Project: Programming and resources for making art accessible to people with Alzheimer’s disease and their caregivers	Rosenberg	2009	83	USA	Mixed methods: Questionnaires, evaluations, and observations	Visual art	Observe	17 People with dementia
A multi-centre randomized control group trial on the use of art therapy for older people with dementia	Rusted et al	2006	167	UK	Mixed methods: Questionnaires and interviews	Visual art	Create	45 People with dementia
“It makes me feel like myself”: Person-centered versus traditional visual arts activities for people with dementia	Sauer et al	2016	48	USA	Quantitative: Observations	Visual art	Create	38 People with dementia
Art museum-based intervention to promote emotional well-being and improve quality of life in people with dementia: The ARTEMIS project	Schall et al	2018	13	Germany	Mixed methods: Questionnaires and observations	Visual art	Observe and create	44 People with dementia and 44 carers
Effects of sculpture-based art therapy in dementia patients—A pilot study	Seifert et al	2017	9	Germany	Quantitative: Questionnaires	Sculpturing	Create	12 People with dementia
A picture is worth a thousand words: Evaluation of the ARTmail senior art project among seniors with cognitive limitations in North Carolina	Sudha et al	2013	1	USA	Mixed methods: Questionnaires and observations	Visual art	Observe	31 People with dementia
Engaging people with dementia in designing playful and creative practices: Codesign or co-creation?	Tsekleves et al	2018	10	UK	Qualitative	Collages	Create	12 People with dementia
Viewing Art on a Tablet Computer: A Well-Being Intervention for People with Dementia and Their Caregivers	Tyack et al	2017	33	UK	Mixed methods: Questionnaires and interviews	Visual art	Observe	12 People with dementia and 12 carers
Art in Alzheimer’s Care: Promoting Well-Being in People with Late-Stage Alzheimer’s Disease	Walsh et al	2011	21	USA	Qualitative: Observations	Visual art	Create	4 People with dementia
The impact of a visual arts program on quality of life, communication, and well-being of people living with dementia: a mixed-methods longitudinal investigation	Windle et al	2018	25	UK	Mixed methods: Questionnaires, interviews, and observations	Visual art	Observe and create	125 People with dementia

Gail Kenning is an Interdisciplinary Research Fellow at the Ageing Futures Institute and fEEL (felt Experience and Empathy Lab) University of New South Wales, and Research Fellow at University of Technology Sydney. Dr Kenning’s recent work is located at the intersection of art, design, and creativity and how these can contribute to health and well-being, with a particular focus on aging and dementia. Her research and practice explore creativity from two perspectives: (1). How creativity can support and facilitate health and well-being (e.g., contributing to social engagement, connection, mental health, etc.) and (2). How creative approaches can be applied in the collection of data to better understand the concerns, needs, and embodied lived experience of older people in relation to physical and mental health and social engagement/disengagement and connection/disconnection. Creative approaches can include participatory creative workshops and deliberative discussion, storytelling, and creative making. Dr Kenning is experienced in organizing and facilitating deliberative discussions, creative workshops, and seminars as part of research and participatory engagement. Combining her background in art practice, academic research, and industry and community engagement, she also consults to industry, arts health organizations, and government on design of health and well-being programs; use of digital media, systems, and software; and evaluation of health and well-being programs.

Dr Mandy Visser is a LEaDing Fellow at Leiden University Medical Center. She is a multidisciplinary experimental researcher specializing in analyzing social and emotional behavior in day-to-day communication and interaction. In 2015, Mandy achieved her PhD at the Tilburg center for Cognition and Communication in The Netherlands, on how people learn to use and interpret emotional expressions in interactions with others. Her work contributes to a better understanding of how emotional behavior changes with aging and how such behavior is affected by social and cognitive factors. The Leiden fellowship builds on research by the Leiden University Medical Center (LUMC) on communication between professional caregivers and people with dementia on advance care planning and strengthening collaborations with other universities and organizations in and outside the Medical Delta.

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