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Characteristics and value of ‘meaningful activity’ for people living with dementia in residential aged care facilities: “You’re still part of the world, not just existing”

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Abstract

Most residential aged care facilities support residents to participate in activities and the importance of activities that are suited to individual preferences and abilities is widely acknowledged. Participating in activities, including those considered to be ‘meaningful’ has the potential to improve residents’ quality of life. However, what makes activities meaningful for people living with dementia in residential aged care facilities is unclear. The aim of this study was to understand the key characteristics of ‘meaningful activity’ in residential aged care facilities and the perceived value of residents participating in these activities. Using a qualitative study design, this study explored ‘meaningful activities’ from the perspectives of people living with dementia in residential aged care facilities, their family members and staff. Across four residential aged care facilities, residents (n = 19) and family members (n = 17) participated in individual interviews while staff (n = 15) participated in focus group interviews. Interviews were recorded, transcribed and analysed using a qualitative content analysis approach. Participant responses suggest that the meaning of an activity is subjective, varying over time and between individuals. Key characteristics of an activity that makes it meaningful include being enjoyable, social and engaging, aligning with the persons’ interests, preferences, and abilities. To be considered meaningful, activities need to do more than occupy the person. The activity needs to be linked to a personally relevant goal and an aspect of the individuals’ identity. Participating in ‘meaningful activities’ was perceived as valuable to encourage participation and socialising, provide a sense of normality for residents and improve their wellbeing. The findings of this study further our understanding of the concept of ‘meaningful activity’ for people living with dementia in residential aged care facilities. Understanding the key attributes of ‘meaningful activity’ can also provide practical guidance for those supporting people with dementia to participate in these types of activities.

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... Additionally, most research into the benefits of meaningful activities has been focused on interventions delivered by others (meaning we don't understand selfmotivated activities well, despite the fact that most activities are self-motivated), in groups (making tailoring to the individual) and often most easily studied within more controlled residential care settings (meaning that generalisability to a community setting is unclear) (e.g. Fernández-Mayoralas et al., 2015;Kielsgaard et al., 2021;Tierney et al., 2023). Furthermore, this research has primarily focused on people over the age of 65 living with typical, memory-led forms of dementia such as Alzheimer's disease (meaning we have little understanding of how meaningful activity engagement is impacted for people affected by young onset and rarer forms of dementia) (e.g. ...
... Furthermore, this research has primarily focused on people over the age of 65 living with typical, memory-led forms of dementia such as Alzheimer's disease (meaning we have little understanding of how meaningful activity engagement is impacted for people affected by young onset and rarer forms of dementia) (e.g. Allison et al., 2022;Fernández-Mayoralas et al., 2015;Tierney et al., 2023). In addition, the nature of activities which have mostly been studied are those which subscribe to the dominant aspects of discourses of active or healthy ageing in being effortful and centred on achieving, functional ability and 'doing' (meaning we may be missing more passive, deactivating, or restful activities which are more about being, and which may also be immensely subjectively meaningful for PLWD, particularly if their cognitive and physical capabilities are challenged) (e.g. ...
... In addition, the nature of activities which have mostly been studied are those which subscribe to the dominant aspects of discourses of active or healthy ageing in being effortful and centred on achieving, functional ability and 'doing' (meaning we may be missing more passive, deactivating, or restful activities which are more about being, and which may also be immensely subjectively meaningful for PLWD, particularly if their cognitive and physical capabilities are challenged) (e.g. Kielsgaard et al., 2021;Tierney et al., 2023). ...
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Supporting ageing in place, quality of life, and activity engagement are public health priorities for people with dementia. The importance of maintaining opportunities for meaningful activities has been widely acknowledged for those with dementia in long-term care, but little is known about what makes activities meaningful for, and how they are experienced by, people with different types of dementia in their own homes. This study used focussed ethnographic methods to explore the motivations and meanings of everyday activity engagement within the homes of 10 people with memory-led Alzheimer’s disease and 10 people with posterior cortical atrophy. While participants’ interactions with their everyday environments were challenged by their diagnoses, they were all finding ways to continue meaning-making via various activities. The main findings are encapsulated in three themes: (1) The fun and the function of activities; (2) Reciprocities of care, and (3) The constitution and continuity of (a changing) self. Ongoing engagement with both fun and functional activities offered participants living with different dementias opportunities to connect with others, to offer care and support (as well as receive it), and to maintain a sense of self and identity. Implications are discussed regarding the development and delivery of tailored interventions and support to enable continued engagement in meaningful activities for people with different types of dementia living in the community.
... This connection encompasses three dimensions: with oneself, through activities that maintain individual identity and health; with others, through activities that foster a sense of belonging within a larger social context; and with the environment, through activities that sustain a relationship with the physical world. For people living with dementia in residential long-term care, Tierney et al. [20] provided additional clarity by identifying six attributes that make activities meaningful: An activity must be enjoyable, engaging, suited to the individual, linked to the person's identity, related to a personally relevant goal and have a social dimension. ...
... In line with this, Nygaard et al. [12] reported that residents with dementia sometimes consciously prefer the role of observer without wanting to actively participate in activities. In addition, Tierney et al. [20] emphasise the value of passive participation in activities: Watching activities or simply being with others can be perceived as meaningful by people with dementia. ...
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Article
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Introduction Recreational activity is a rising topic in long-term care settings as it contributes to residents' physical and emotional wellbeing. As residents' abilities of sustaining and initiating activities decline, the care environment becomes vital in supporting residents maintain meaningful engagement in activities and life. Understanding how various aspects of the care environment influence residents' opportunities and quality of recreational activity engagement is a timely and relevant topic in the context of improving quality of life for residents with dementia. The research questions guiding this scoping review are: (1) How do staff characteristics and organisational policies influence residents' levels of participation in planned and self-directed activities? (2) What is the role of the physical environmental features in common spaces of the care setting in supporting residents' activity participation? Methods and analysis This review will follow the Arksey and O'Malley scoping review methodology. The search strategy will be applied to five bibliographic and citation databases. Study selection will occur in two steps: first, two reviewers will screen the titles and abstracts of all search results, and second, the first author will independently conduct a full-text review. Data will be extracted from the included studies and analyzed using Braun and Clarke's thematic analysis. The extracted data will be presented in a narrative format, accompanied by tables that reflect the review's objectives. Ethics and dissemination Since the methodology of the study involves collecting data from publicly available publications, it does not require ethics approval. The findings will offer valuable insights to inform the design, practice and research of long-term care and recreational activities. The scoping review results will be disseminated through an open- access publication in a peer-reviewed journal.
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Objectives: Participation in group activities can benefit persons with dementia, alleviating boredom, improving affect, maintaining function, and decreasing problematic behaviors. Methods: We describe patterns of attendance of residents with dementia at nursing home activity groups and investigate stimulus and environmental factors that may affect attendance. Results: Residents participated in 60.8% of the activities, with reasons for nonattendance including refusal (9.7%), not being on the unit (7.8%), being asleep (6.8%), and being involved in activities of daily living and other activities (8.3%). On average, 3.5 other residents not recruited for the study chose to participate in each group session. Group attendance was significantly related to group topic. Implication: The need for activities was evident by the attendance of both invited and other residents. Understanding the factors that affect attendance is the first step toward developing procedures to maximize participation in activities in order to decrease loneliness and boredom in this population.
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Background: Older adults living in residential aged care facilities (RACFs) often experience limited opportunities for social connection despite close proximity to peers, which has implications for mental health and quality of life (QoL). The introduction of large-scale undergraduate health student placements in RACFs may enhance opportunities for meaningful engagement through social connection, although this remains unexplored. Objective: This research explores whether interpersonal encounters between health students and RACF residents influence residents' opportunities for social connection and QoL. Methods: A mixed methods design was employed which included questionnaire data from residents, and qualitative interview data from residents, family members and RACF staff. Data were collected during and after student placements to allow for an in-depth exploration of residents, family members and staff perspectives. Results: Forty-three participants (28 residents, 10 staff and five family members) were recruited during 2014. Overall, many residents had clinical levels of depression, mild cognitive impairment and multiple morbidities, however reported moderate-to-good QoL. Thematic analysis was undertaken on interview transcripts, and three themes emerged: (i) social isolation and loneliness fostered by residents' age-related conditions, (ii) students expand socially supportive connections beyond the RACF and (iii) meaning making by sharing health experiences, which was found to help renegotiate older adults' pervasive narrative of vulnerability. Conclusion: Supported and structured health student placements in RACFs enable older adults to participate in meaningful encounters with younger people. These encounters focus on sharing health experiences and address long-standing issues of isolation and loneliness by providing opportunities for social connection.
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Qualitative studies were synthesized to describe perspectives of people with dementia regarding meaningful activities. Themes of connectedness were identified using a meta-ethnography approach. The theme of being connected with self encompasses engagement for continuity, health promotion, and personal time. The theme of being connected with others includes being with others not to feel alone, doing an activity with others, and meaningful relationships. The theme of being connected with the environment encompasses being connected to one's familiar environment, community, and nature. This synthesis suggests that connectedness is an important motivation for engagement in daily activities. Findings indicate that identifying the underlying motivation for an individual with dementia to engage in different activities is important for matching a person with activities that will be satisfying. This review may inform the development of interventions for engaging people with dementia in meaningful, daily activities and creating connectedness to self, others, and the environment. © The Author(s) 2015.
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Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL. The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations. This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.
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The effects of providing descriptive prompts to increase activity attendance and engagement in 6 individuals with dementia were evaluated using a reversal design. The results showed that providing descriptive prompts increased activity attendance and engagement for all participants. The results support the use of antecedent interventions for increasing appropriate behavior by individuals with dementia.
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Aim: The term "meaningful activity" is widely used in policy, practice and the research literature. However, definition and use of the term is unclear and inconsistent. A concept analysis was conducted to explore the fundamental attributes that make an activity meaningful for older adults with dementia and propose a conceptual model for understanding "meaningful activity" in this population. Methods: This study followed Walker and Avant's method of concept analysis. Searches were conducted in the Scopus, MEDLINE, CINAHL, PubMed, Academic Search Elite and Web of Science databases for literature using the term "meaningful activity." Papers published before 1996 were excluded. Results: Twenty-nine papers concerned with "meaningful activity" were analysed. This analysis identified five attributes that make activities meaningful for people with dementia: (a) enjoyable; (b) suited to the individual's skills, abilities and preferences; (c) related to personally relevant goals; (d) engaging; and (e) related to an aspect of identity. The conceptual model illustrates how individual and opportunity factors influence participation in "meaningful activity" and the consequences of this participation as discussed in the existing literature. Conclusion: The findings of this concept analysis provide insight into what characteristics make an activity meaningful. Specific activities that are meaningful are different for each person and participation in personally 'meaningful activities' has the potential to positively impact the lives of people with dementia. Implications for practice: This understanding of 'meaningful activity' can be used by those involved in research, planning or delivery of services and care for people with dementia to encourage and support participation in activities that are meaningful to individuals.
Article
Background/aim Occupational therapists working in palliative care aim to enable clients living with a life‐limiting illness to continue participating in meaningful activities for as long as possible. However, little is published about the occupations people living with a life‐limiting illness wish to engage in, and how occupational therapists can best enable occupational engagement. Therefore, this study aimed to gain an in‐depth understanding of occupational therapists’ perceptions on clients’ occupational engagement post‐diagnosis of a life‐limiting condition. Methods Occupational therapists working in Australia with people with a life‐limiting illness were recruited to participate in a national online survey over the period of a month. Recruitment used a purposive, snowball sampling technique, resulting in 144 survey responses. Data were analysed using modified grounded theory methods. Results Findings revealed two interrelated categories and four subcategories. The first category, focusing on life is concerned with therapists’ perceptions of how clients continue to focus on living post diagnosis and encompasses two subcategories: (i) prioritised engagement and (ii) altered engagement. The second category, preparing for death, centres on therapists’ perceptions of what clients do to practically prepare for death and find closure as their illness progresses, and is comprised of the two subcategories: (i) practical preparation for death and (ii) “facilitating closure”. Conclusion Therapists perceived that meaningful occupational engagement changes over time as occupational performance levels decrease and clients prepare for death.
Article
Background: People with moderate to advanced dementia living in residential care are at risk of occupational deprivation. Person-centered care has been adopted as a guiding principle in the provision of residential care for older adults with dementia. In this context, there has been shift in occupational therapy practice from addressing occupational performance towards focusing on meaningful engagement. While both meaningful engagement and person-centered care have been well researched the relationship between the two concepts is poorly understood. Aim: A critical interpretative synthesis was conducted to determine how principles of person-centered care inform occupational therapy practice in relation to promotion of meaningful engagement among residents with moderate to advanced dementia. Methods: A systematic search of research addressing meaningful engagement of people with moderate to advanced dementia identified 26 papers. Results: Papers were classified as theoretical papers and empirical research. Two overarching constructs emerged, namely promoting a culture of collaborative care and understanding the resident as a person with a past, present and future. Conclusions: Occupational deprivation prevails and person-centered care is not fully addressed if opportunities for growth and engagement for residents with moderate to advanced dementia is not extended beyond their life history. Significance: Creating continued opportunities for building agency of residents with dementia could promote occupational justice in residential care.
Article
Background In studies involving people with dementia, researchers have historically defaulted to seeking consent from a proxy, the assumption being that people with dementia are unable to provide their own informed consent. This choice denies people with dementia a voice in the consent process, thus disregarding their autonomy and agency. Recently, other options for improving the consent process have been explored. Objective This study aimed to determine whether nursing home residents with dementia could demonstrate an ability to provide their own informed consent as determined by the Evaluation to Sign Consent instrument. Methods As part of a larger study on the quality of life of nursing home residents, the Evaluation to Sign Consent was administered to 392 people diagnosed with dementia. Data on demographic variables, such as gender and age, as well as level of cognitive impairment, were also collected. Results Just over one-fifth (22%) of the residents with dementia were judged as having the capacity to provide their own informed consent to participate in this specific research project. Consistent with existing literature, capacity to consent was significantly, and negatively, associated with cognitive impairment. Conclusion This study demonstrates that assuming all people diagnosed with dementia are unable to provide informed consent for research on the basis of cognitive test scores, or on clinical assessment alone, potentially denies them the autonomy to make a decision that they may be capable of making. Research involving people with mild-to-moderate dementia needs to consider evaluating whether potential participants have the capacity to provide their own consent.
Article
Objectives The aims of this study are (1) to describe the types of leisure activities preferred by persons with dementia in the past and present, as reported by family members and therapeutic recreation staff members, and (2) to examine the influence of demographic and functional abilities variables on the perceived current interest of persons with dementia. Method Family members of persons with dementia and therapeutic recreation staff involved in the care of those persons completed an activities preference assessment concerning the persons with dementia. Participants were recruited from a nursing home and a senior day center. Family members completed the assessment for the past and present, and staff members completed the assessment for the present. Results For present preferences, music was the most often preferred activity according to both family and staff, followed by reminiscence and reading, while the least desirable activity was cooking/baking according to family and trivia games according to the staff. Current preferences were significantly related to past preferences. Gender was also related to preference for some activities. A significant reduction in preference from the premorbid past to the present was found for music, reading, and cooking. Additionally, the number of activities persons preferred as reported by both caregiver groups was affected by dementia. Family members tended to report lower preference levels for the activities in the present in comparison to the staff, and they were also more likely to report not knowing the present level of preference than therapeutic recreation staff members. Conclusion The assessments by both therapeutic recreation staff members and family members shed light on leisure preferences of persons with dementia, while the varying reports reflect a possibly different perspective of the two caregiver groups.
Article
Although a few papers documented benefits of group therapeutic activities for individuals with dementia, there is a dearth of studies that have investigated the effects of group activities on persons with dementia. This paper introduces a theoretical framework of studying group therapeutic recreational activity, the Comprehensive Process Model of Group Engagement, and an assessment tool, the Group Observational Measurement of Engagement (GOME). We also report the psychometric properties of this assessment. One hundred and four persons with dementia took part in ten different group activities, with each activity conducted twice at random order so that 20 activities were observed for each group of participants. Following each group activity, research and therapeutic recreation staff members used the GOME assessment to independently rate participants on individual-level measures of attendance duration and engagement, and group level measures (e.g., positive and negative interactions among group members). Reliability and validity analyses comparing observer ratings for each group activity on the individual-level measures of attendance and engagement showed good psychometric properties. Different measures collected on a group level differed with respect to their psychometric quality. We present a theoretical framework to understand group engagement and present measures that could be used in future research and practice.
Article
Objectives: Person-centered care constructs such as fulfilled preferences, sense of control, and life satisfaction might contribute to loneliness among nursing home residents, but these relationships have not been thoroughly explored. The aim of this study was to examine the relationship between fulfilled preferences and loneliness in nursing home residents with perceived control and life satisfaction as potential mediators. Methods: The study utilized a cross-sectional design, examining the targeted variables with a questionnaire administered by trained research staff. A convenience sample of 65 residents (median age = 71) of eight nursing homes were interviewed. Linear regression analysis was utilized to examine the mediation hypotheses. Results: The relationships between fulfilled preferences and loneliness (β = −.377, p = .002), fulfilled preferences and perceived control (β = −.577, p < .001), and perceived control and loneliness (β = .606, p < .001) were significant, and the relationship between fulfilled preferences and loneliness (β = −.040, p = .744) became non-significant when perceived control was included in the model. The relationships between fulfilled preferences and life satisfaction (β = .420, p < .001) and life satisfaction and loneliness (β = −.598, p < .001) were significant, and the relationship between fulfilled preferences and loneliness (β = −.152, p = .174) became non-significant when life satisfaction was included in the model. Conclusion: The findings suggest an important association between person-centered care, particularly fulfilling personal care and recreation preferences, and social-affective needs of long-term care residents. Fulfilling preferences may be an appropriate intervention target for loneliness.
Article
Aims: Dementia is being increasingly recognised as a major public health issue for our ageing populations. A critical aspect of supporting people with dementia is facilitating their participation in meaningful activities. However, research to date has not drawn on theories of ageing from developmental psychology that would help undergird the importance of such meaningful activity. For the first time, we connect existing activity provision for people with dementia with developmental psychology theories of ageing. Method: We reviewed the literature in two stages: first, we narratively searched the literature to demonstrate the relevance of psychological theories of ageing for provision of meaningful activities for people with dementia, and in particular focused on stage-based theories of adult development (Carl Jung and Erik Erikson), gerotranscendence (Tornstam), selective optimisation with compensation (Baltes and Baltes), and optimisation in primary and secondary control (Heckhausen and Schulz). Second, we systematically searched PubMed and PsycINFO for studies with people with dementia that made use of the aforementioned theories. Results: The narrative review highlights that activity provision for people with dementia goes beyond mere pleasure to meeting fundamental psychological needs. More specifically, that life review therapy and life story work address the need for life review; spiritual/religious activities address the need for death preparation; intergenerational activities address the need for intergenerational relationships; re-acquaintance with previously conducted leisure activities addresses the need for a sense of control and to achieve life goals; and pursuit of new leisure activities addresses the need to be creative. The systematic searches identified two studies that demonstrated the utility of applying Erikson's theory of psychosocial development to dementia care. Conclusion: We argue for the importance of activity provision for people with dementia to help promote wellbeing among an increasing proportion of older people.
Article
Background: Dementia residential facilities can be described as traditional or non-traditional facilities. Non-traditional facilities aim to utilise principles of environmental design to create a milieu that supports persons experiencing cognitive decline. This study aimed to compare these two environments in rural Australia, and their influence on residents' occupational engagement. Methods: The Residential Environment Impact Survey (REIS) was used and consists of: a walk-through of the facility; activity observation; interviews with residents and employees. Thirteen residents were observed and four employees interviewed. Resident interviews did not occur given the population diagnosis of moderate to severe dementia. Descriptive data from the walk-through and activity observation were analysed for potential opportunities of occupational engagement. Interviews were thematically analysed to discern perception of occupational engagement of residents within their facility. Results: Both facilities provided opportunities for occupational engagement. However, the non-traditional facility provided additional opportunities through employee interactions and features of the physical environment. Interviews revealed six themes: Comfortable environment; roles and responsibilities; getting to know the resident; more stimulation can elicit increased engagement; the home-like experience and environmental layout. These themes coupled with the features of the environment provided insight into the complexity of occupational engagement within this population. Conclusion: This study emphasises the influence of the physical and social environment on occupational engagement opportunities. A non-traditional dementia facility maximises these opportunities and can support development of best-practice guidelines within this population.
Article
This systematic review describes the benefits of individualized leisure and social activity interventions for people with dementia (aim 1), how these interventions were individually tailored (aim 2), and what recommendations or suggestions can be made for these interventions and further studies (aim 3). A total of 32 included studies were organized into four categories based on how the intervention was individually tailored. These categories include: 1) performance factors; 2) self-identity; 3) music preference; and 4) life experiences and past memories. The authors discuss benefits by synthesizing the finding of the included studies in each category and suggestions.
Article
Older adults prefer to engage in a variety of leisure and recreational activities. These activities vary in type depending on the older adult's level of physical and mental ability. There is little empirical evidence documenting the preferred activities of older adults with dementia. The present study examines the self-reported activity preferences of 216 persons with dementia and the relationship of these activities to demographic characteristics and well-being outcomes. Results demonstrate hypothesized demographic differences and reinforce the importance of engaging persons with dementia in activities that they find meaningful.
Article
How wellness is understood and its links to leisure in the long-term care (LTC) context have been rarely considered, particularly from the perspectives of residents. Using participatory action research (PAR), this study addresses a gap in the literature by considering how residents conceptualise wellness and the links to leisure. The PAR team made up of residents, family members and staff within a LTC home collaboratively discussed how to best attain and interpret resident perspectives on wellness and required supports. The findings inform a resident wellness model that emphasises the importance of my relationships, myself, my home and my activities to the wellness of LTC home residents and provide insights into how wellness in LTC homes as well as residents' leisure can be better supported.
Article
While our understanding of the subjective experience of dementia is growing, leisure's role within that experience is less clear. This study, guided by hermeneutic phenomenology, aimed to understand the meaning and experience of leisure for persons living with early stage memory loss. Four participants with early stage dementia participated in interviews, participant observation, and photovoice, in which participants are given cameras and asked to take photos of their day to day lives (Wang, 1999). Data revealed that participants experienced daily life with dementia, including leisure, within a paradox of challenge and hope. They struggled with the changes they experienced as a result of dementia, such as muddled thinking, fluctuating abilities, draining energy, frightening awareness, and disquieting emotions. However, they found ways to tackle life with dementia, by reconciling life as it is, battling through by being proactive, living through relationships, being optimistic, and prolonging engagement in meaningful activity to live their lives with hope.
Article
This study explored how nursing staff promote person-centeredness in long-term care settings. The study used an anthropological free-listing approach to data collection and qualitative content analysis to analyze written self-report descriptions from a convenience sample of Swedish long-term care staff (N = 436). The analyses resulted in four themes that illuminate how nursing staff promote person-centeredness: Promoting Decision Making, Promoting a Meaningful Living, Promoting a Pleasurable Living, and Promoting Person-hood. The study contributes to the literature by providing concrete descriptions of how person-centeredness was facilitated by staff in their everyday practice and contributes to move person-centeredness from the philosophical, policy, and conceptual domains toward clinical implementation. The study also suggests that promoting pleasure for residents is a dimension central to person-centeredness and to health-promoting gerontological nursing, and that "small talk" is an emerging nursing phenomenon that deserves more research attention. [Journal of Gerontological Nursing, xx(x), xx-xx.].
Article
We present an analysis of activity theory of aging, examine the effects of activity on psychological well-being, and explore alternative conceptualizations of activity to determine appropriate future directions. We relate individual activity items to measures of psycholog ical well-being to determine whether these items display the expected theoretical association with psychological well-being. Then we compare a model in which solitary, informal, and formal activities have additive effects on well-being with two models in which these activity types in teract to influence measures of well-being as predicted by activity the ory. Many activity items are not significantly related to some measures of well-being. In addition, the influence of activity type on well-being is not increased by allowing for unique combinations of activity types. We find little utility in differentiating activities by type. Our findings imply that psychological well-being is influenced by activities representing a mobile lifestyle that includes a sense of control.
Article
Both negative discourse surrounding dementia and changes that occur from an illness causing dementia can threaten identity. While research shows that identity remains in dementia, little is known about the role leisure plays in identity work in the dementia context. The purpose of this study was to explore the role of leisure in maintaining identity in early-stage dementia. Four participants with dementia living in the community participated in this interpretive phenomenological study. Through multiple interviews, participant observation and photovoice, conducted over several months with each participant, we found that while participants experienced many threatening assaults on identity, leisure served as an important space to uphold identity and remain engaged in life.
Article
This study examines the effect of activity aide—to-resident ratios on outcomes of special-care-unit residents over a 1-year period following admission. Existing studies focusing on the effects of staff ratios on resident outcomes tend not to separate activity aides from other types of staff, if they study them at all. However, research on best care practices in special care units for persons with dementia has established the importance of activities for optimal resident outcomes. Employing multiple regression analyses, this study finds evidence that increased activity aide— to-resident ratios have positive effects on three resident outcomes—expressive language skills, social skills, and cognitive function—when controlling for resident characteristics, facility characteristics, and environmental design. It is concluded that because activity aide—to-resident ratios tend to be very low yet appear to have a significant positive effect on resident outcomes, a modest increase in activity aide—to-resident ratios would be beneficial for residents with dementia in special care units.
Article
To outline the importance of understanding quality of life (QOL) in people with dementia living in long-term care. To consider several key research questions and some of the challenges and impact of neglecting knowledge transfer. There is a gap between the knowledge in the broad dementia research literature and transfer of knowledge into practice. Quality of life research and transfer of research into practice is one means by which health professionals can inform health and social care policy and improve care practice. There are a number of unanswered research questions in relation to QOL in people with dementia living in long term care. A selection of questions discussed in this paper relate to the impact of staff knowledge of mental health assessment and the importance of therapeutic communication, cognitive training programs and social biography, individual needs, weight and behavioural and psychological symptoms of dementia (BPSD), resident choice and the impact of the environment on QOL. Research methods used to assess QOL must not be too restrictive and mixed methods and data from multiple perspectives should be encouraged so that an extensive understanding is uncovered. Potential strategies to assist knowledge transfer in long-term care settings are needed.
Article
We examined the impact of setting characteristics and presentation effects on engagement with stimuli in a group of 193 nursing home residents with dementia (recruited from a total of seven nursing homes). Engagement was assessed through systematic observations using the Observational Measurement of Engagement (OME), and data pertaining to setting characteristics (background noise, light, and number of persons in proximity) were recorded via the environmental portion of the Agitation Behavior Mapping Inventory (ABMI; Cohen-Mansfield, Werner, & Marx, (198922. Cohen-Mansfield , J , Werner , P and Marx , MS . 1989. An observational study of agitation in agitated nursing home residents. International Psychogeriatrics, 1: 153–165. [CrossRef], [PubMed]View all references). An observational study of agitation in agitated nursing home residents. International Psychogeriatrics, 1, 153–165). Results revealed that study participants were engaged more often with moderate levels of sound and in the presence of a small group of people (from four to nine people). As to the presentation effects, multiple presentations of the same stimulus were found to be appropriate for the severely impaired as well as the moderately cognitively impaired. Moreover, modeling of the appropriate behavior significantly increased engagement, with the severely cognitively impaired residents receiving the greatest benefit from modeling. These findings have direct implications for the way in which caregivers could structure the environment in the nursing home and how they could present stimuli to residents in order to optimize engagement in persons with dementia.
Article
This paper is a report of a study conducted to identify the determinants of quality of life for older people living in residential care, including exploration of mediating factors at personal and institutional levels and to construct a model of these. The quality of life of older people living in residential care is an under-researched area. The focus in the gerontology literature has been on quality of care rather than quality of life for these people. There is emerging consensus, however, that quality of life for older people is a complex, multidimensional concept, incorporating both subjective and objective elements, whether people live at home or in residential care. A grounded theory study was conducted in 2005-2006. A total of 101 interviews were undertaken with older people across 12 sites, representing different types of residential care in Northern Ireland. The constant comparative technique was used to analyse data. Four themes having an impact on the quality of life of residents were identified: ethos of care; sense of self and identity; connectedness; and activities and therapies. Mediating and facilitating and/or constraining factors for quality of life were also identified. The core category was conceptualized as 'maximizing potential'. Achieving optimal quality of life for older people in residential care will remain elusive unless all the factors which affect on it are taken into account by practitioners and policy-makers. Improving the quality of life of older people in residential care will require action in respect of all of the domains identified in this paper.
Article
Older people with dementia living in care homes often lack appropriate activities. Although homes are expected to offer a range of activities to meet residents' needs, little is known about what makes activities meaningful for people with dementia. This study explores concepts of meaningful activity, as defined by older people with dementia living in care homes, staff and family carers. This qualitative study used focus groups including 17 residents, 15 staff and eight family carers from three care homes. Transcripts of the groups were subjected to thematic content analysis using a grounded theory approach. Four activity themes emerged -- 'reminiscence', 'family and social', 'musical' and 'individual'. There were also two related themes -- 'lack of meaningful activity' and 'what makes activity meaningful'. Residents found meaning in activities that addressed their psychological and social needs, which related to the quality of the experience of an activity rather than specific types of activities. In contrast, staff and family carers viewed activities that maintained physical abilities as meaningful. People with dementia staff and carers had differing views about what made activities meaningful. Organisational limitations and social beliefs limited the provision of meaningful activities for this population. The study also indicates areas for improving activity provision in care homes.
Article
This paper examines key challenges and strategies for including older people with dementia in an ethnographic study of quality of life in institutional care settings. The methods of interview and observation are described in relation to meeting four research challenges: verbal communication impairment, memory loss, decision-making capacity, and emotional disposition. A range of strategies for privileging the voice of the person with dementia is recommended which include: using different methods be spoke to each person with dementia; greater flexibility and time; preliminary meetings with the person with dementia; discussions with formal and informal carers; and research training. The researchers also conclude that the use of observation and interview are 'meaning-making occasions' which are qualitatively different but equally valuable for understanding quality of life in care settings.
Article
Theories exist to challenge current practice, create new approaches to practice and remodel the structure of rules and principles. One question is whether nurses could find in psychosocial theories of ageing a theoretical foundation on which to base support of older people in their ageing process. The aim of the present paper was to analyse five psychosocial theories of ageing and to discover what they could mean for gerontological nursing in Sweden. A literature search was conducted to find original works. Research questions inspired by Fawcett's framework guided the analysis. Psychosocial theories of ageing cover different aspects of the ageing process, but do not address crucial issues regarding the attitudes and structure of good nursing care. These theories provide no clear guidance on how to care for older people and how to support them in their ageing process. However, the analysis did show that the theories contain underlying values that influence society and staff as regards their views on the ageing process and how care of older people should be carried out. Nursing interventions to support ageing will be quite different depending on the theoretical perspective taken by nurses. There is a need to translate the ageing theories into guidelines, so that staff in gerontological care will have tools to use in practice irrespective of which theoretical perspective they choose to use in care. This could also promote care that is tailored to each individual older person.
Article
The aim of this study was to explore the quality of life of older people living in long-stay care in Ireland from the perspectives of residents and staff. While the literature on quality of life is complex, several areas of agreement are evident. Quality of life is a multi-dimensional concept, which cannot be explained solely in medical terms and only makes sense if presented in an holistic context. Quality of life contains both subjective and objective elements; therefore, there is a need to take account of both when measuring the concept. A mixed method research design was selected for this study. Three methods were employed; focus groups (n = 7) a quantitative survey of 526 long-stay facilities and qualitative interviews with 101 residents and 48 staff. The findings revealed four thematic domains of quality of life: care environment and ethos of care, personal identity, connectedness to family and community and activities and therapies. The study found that there were differences in resident experiences across care study sites and important differences in staffing provision, skill mix and physical environment between private and public facilities. Several factors were also found that either enhanced or diminished residents' potential to retain their connections and relationships with other people. Finally, residents were most likely to participate in activities which were designed to take into account their own particular interests. This study articulates domains of quality of life from the perspective of residents and staff and gives support to the claims that management and organizational structures within long-stay care facilities matter for quality of life. Clear identification of what is important to older people is important as services need to be shaped around quality of life as much as quality of care, notwithstanding the close relationship between the two.
Article
While it is assumed that persons with dementia benefit from being involved in meaningful activity, research examining this claim is limited. In particular, how individuals with dementia perceive this involvement is poorly understood. Therefore, the purpose of this research is to determine what constitutes meaningful activity from the perspective of persons with dementia, and to explore how they perceive its significance in their lives. We conducted an interpretive phenomenological analysis of multiple interviews and participant observation conducted with eight community-dwelling elders with mild to moderate dementia. For several participants, the single most important driving force in their lives was being active, doing as much as they possibly could. They were involved in a wide range of activities including leisure pastimes, household chores, work-related endeavors, and social involvements. These activities were meaningful in three ways: Through their involvement, participants experienced feelings of pleasure and enjoyment; felt a sense of connection and belonging; and retained a sense of autonomy and personal identity. Findings suggest that familiarity of the social and physical environment promotes involvement in activities. This provides a sense of continuity for people with dementia, with implications for their quality of life and personhood. Further implications of these findings for dementia care and future research are discussed.
Article
This paper is a description of inductive and deductive content analysis. Content analysis is a method that may be used with either qualitative or quantitative data and in an inductive or deductive way. Qualitative content analysis is commonly used in nursing studies but little has been published on the analysis process and many research books generally only provide a short description of this method. When using content analysis, the aim was to build a model to describe the phenomenon in a conceptual form. Both inductive and deductive analysis processes are represented as three main phases: preparation, organizing and reporting. The preparation phase is similar in both approaches. The concepts are derived from the data in inductive content analysis. Deductive content analysis is used when the structure of analysis is operationalized on the basis of previous knowledge. Inductive content analysis is used in cases where there are no previous studies dealing with the phenomenon or when it is fragmented. A deductive approach is useful if the general aim was to test a previous theory in a different situation or to compare categories at different time periods.